What Has Taken Me By Surprise

Today I feel great except for a little soreness from using my upper muscles more than usual. I am not complaining. This is an unusual thing about having more strength from my surgery. It’s there, but when I us it too much, which isn’t hard to do, I’m very sore. I can live with it though, trust me.
There are a several stem cell treatments going on right now. To clarify, I’m in the Neuralstem, open label, phase II safety and dose escalation trial. I received 4,000,000 stem cells directly into my cervical spinal cord. This is the best place as far as survival because the hope is it affects the diaphragm muscles which keeps you breathing on your own if they have improved strength. My breathing has improved some.

I want to share something new. I’ve been taken by surprise by my leg strength improvement. This has shown true by testing, it’s certainly not just a feeling. I wasn’t expecting this great benefit. I walk some with my walker during my daily range of motion exercises, but no easy stroll by any means, also a short distance. My right leg especially has been very weak leaving me to compensate with upper body strength, mainly left side, It hasn’t come easy or wasn’t safe for any real distance. The leg strength came on very unexpectedly. Oddly, what I’ve experienced so far with my new found leg strength is I still can’t walk right, or for any real distance. I still do it with my daily exercises, however, I don’t use my walker. Tony is usually right by my side. Don’t get me wrong, I have nothing on Frankenstein. I’ve said before about the strength in other areas. It feels different, not my old self. I have to compensate for the changes.

My right toes are somewhat curled under, which doesn’t help. I have dropfoot on the right side and I can lift my foot slightly more. I can easily see breaking them trying to walk barefoot. I don’t need that so it’s shoes with this exercise. It also doesn’t take much for the fatigue to hit my legs and they are back to baseline weak and they ache, so I’m careful not to overwork them right now in fear of losing what I’ve gained. Since surgery, even before I noticed they were both stronger, they ache. That’s the only way I know to describe it. With or without exertion, they ache a lot. I like to think this is them improving, but that is absolutely not a certainty at this time, just a hope, and a hope they continue gaining strength.

I’m far from taking jogs but the stem cells injected into my cervical spinal cord have also had a completely unexpected affect on my legs. At this point I don’t see it turning into me walking out and about on my own, but it does give me the benefit of moving them and longer ability to bear weight and transfer on my own. Longer independence in any way with ALS is a huge benefit.

I have hope for all clinical trials for ALS right now, but with my experience in what I’m participating in, I stand firm in my belief that these particular stem cells are going to be our first truly beneficial treatment. I think there will need to be an easier and less invasive way to get the stem cells in the spinal cord for it to be an option for the masses. There also needs to be time to see how long the benefits last, as well as other things that need to be better understood before it’s predictable for each individual. Of course that’s the job for the great researchers, and they’re getting closer. I also still believe we need to hurry! Until there’s a better way to deliver and even be positive on who will benefit the most, anyone who passes the inclusion criteria should be able to have access to this surgery. I am not the only person to have proven changes. With that information, I think it’s a terrible injustice to tell a person they will have to wait. This is likely to result in leaving their loved ones to mourn their death while watching and hearing of others benefiting.

It is possible, and they will and should be informed they may not benefit in any significant way at all, and can even be harmed or die. This is still a very new surgery and the first to go into the gray matter of the spinal cord. Nothing to be taken lightly. Having ALS affects the benefit to risk for many patients and they should still have the right to try if they so choose.

1 comment:

“It feels different, not my old self. I have to compensate for the changes.”

In 2004, Dr. Jonathan Glass published a paper titled “Amyotrophic lateral sclerosis is a distal axonopathy: evidence in mice and man” which, as I understand it, says nerves in the peripheral nervous system(PNS) of ALS patients die or break down much earlier than motor neurons in the central nervous system(CNS).

And we also know peripheral nervous system has some capacity of regeneration. Thus my uneducated guess of your several reports of “strange new strength” is because some motor neurons have been nursed back to life so that they start to try reconnecting to your muscles. However this reconnection may not be perfect in that one motor neuron which used to connect to muscle A could now connect to muscle B. When your brain starts to innervate your muscle A, the muscle it actually innervating could be muscle B. Therefore you (your adult and “stubborn” brain) feels different or wired or “new”.

Of course, the above is my ignorant guess. It’s always a pleasure to hear your new progress.